Status
Not open for further replies.

monster

Distinguished member
Joined
Apr 30, 2011
Messages
126
Reason
Other
Diagnosis
00/0000
Country
US
State
NJ
City
USA
This might sound like a silly question but I've been wondering.

After everything been ruled out, and a person doesn't have a definite diagnosis, why do neuromuscular doctor have a person, with definate symptoms, come back every six months?

When there isnt anymore more 'ruling out' testing but clinical exams, what else could it be?

Is it only because they need to see symptoms progress to meet a certain criteria for a als /pls diagnosis?

Is it to see how slow/fast your progression is in a disease?
 
Yes, that's right
 
Boy can I relate to your post. Neuro doc says no need for a spinal tap, only twice a year blood tests, looks at CK, push, pull, walk down the hall, take off your shirt, I show him my twitching bicep, and he says come back in 4 months. I believe he is not telling me everything because last time he said I may have BFS because I haven't had a fast progression. Everyone knows that if an EMG showed denervation in multiple areas and reinervation then it can't be BFS. I suspect he is waiting to see weakness, atrophy or something else. Funny the neuro won't call it but my GP had me stick out my tongue saw it quiver on the tip and declared "bulbar ALS". Sorry to vent on your post but I certainly relate to how you feel.
 
Last edited:
I would definitely recommend to both Monster and Guguy that you seek second opinions. My stepfather went to a regular neurologist and was diagnosed with MS October 2012 and went through the whole battery of tests and multiple visits, in March he said it was moving much too quickly to be MS, put him in the hospital for a week for observation and saw another general neurologist there... still no diagnosis, went back in for a check up in early June and still nothing (though his speech was almost completely gone, was constantly choking and unable to walk more than a few steps with a walker). I finally threw a fit until they referred him to the ALS clinic, the clinic turned around and said to go see a MS specialist first who also quickly told him it was not MS but then he did get us in to see an ALS specialist who diagnosed him finally. I will say that having a diagnosis doesn't change the disease or its course but at least if you are struggling with things like needing special equipment or having difficulties getting any financial assistance because you don't have a diagnosis it will at least help get you going with those things. I hope for you both that you do not have ALS but regardless of what you have sitting and waiting patiently will get you no where and sometimes it is the squeaky wheel that gets greased so voice your frustrations, do some research, go see doctors until someone can get you an answer.
 
I really appreciate the advice and thanks for giving it.

In my situation I am 64 and I am just 7 and a half months away from getting Medacare however I still work and will continue to do so as long as possible. At 64 you can't get disability insurance or even afordable life insurance (have a bad back to boot). If I could get insurance then I would be happy to not be diagnosed. What would be the hurry to hear something that deep down inside you've known for 3 years. I guess I could remove the closet between the downstairs bedroom and the bathroom in order to make quick trips to the john easier.

A diagnosis wouldn't change anything except to make my wife's menopause worse. My wife thinks that because I don't have enough faith that is why I won't get better. She also thinks that it is all in my head even after I showed her my twitching neck, bicep and leg. Of course she doesn't understand the significance of a dirty emg.

I have no one to share my feelings with (brother and sister live a half a world away) and so it is a lonely journey that I am on. Son is 16 and doesn't want to hear or believe my problems. Can't get a second neuro opinion because there is only one on Guam. And on this tiny island paradise there is no ALS Association or MD either. No loan closet for me.

I have been reading, studying and enjoying all of the personalities and good advice on this forum for 3 years and will continue to do so.

Well my pity party is over now, time to put on my big panties and face each day as they come. Every day I thank GOD for being able to wlak, talk, eat, work, drive, breath, remember my name, etc. I can see the day coming when instead of thanking him, I will have progressed to the point of asking him to take my life and end my families burdens.

Talk about a god send, this forum contains a wealth of information that you wish you didn't need to know. Kudos to all the contributors. And to my fellow bulbarians, may you keep a stiff lower lip.
 
Last edited:
I have to be honest... Despite my Neuro diagnosed me initially with some neuropathies in arms and legs... I see progress in my weakness and that phrase "wait and come back in six months so we'll see" is really nerve-racking..

I have been doing stuff to get busy but you know... you just can't take something like this out of your mind....

Now my throat is giving me some issue... so maybe another app for me soon...

Jon
 
Believe me when I say it never leaves my mind, but I don't let it take over my life. I go every 6 months for an update. At that time I tell him what is going on. We change meds or up doses and I go back in 6 months. I WILL NOT let it run my life. I will work around it, over it and under it to do what I want to do. Maybe not at the speed I used to but I am determined to live my life.

You need to too.....Peace
 
I'm guessing to see if symptoms progress or get better. I can definitely understand prolonging a diagnosis due to insurance reasons, or taking a break from the exhausting diagnostic process, or out of denial/fear. I myself took a few weeks 'off' after a doctor ordered an MRI and blood work. I put it off just because I was so tired of being poked.
 
All good advice from Vicki. You guys need to take it. Why NOT wait and see?
 
I really appreciate everyone's thoughts and advice given here.

I had slight symptoms start in 2006.

In 2011 my clinical showed hyperreflexia in my knees.

In 2012 clinical revealed hyperreflexia in lower and upper extremities and a positive Hoffman, questionable jaw jerk.

My two emg's, one in 2011 and one 2012 only showed occasional fasciculations.

I went for a second opinion in 2012. Clinical revealed hoffman, hyperreflexia, and jaw jerk, he said Nothing was wrong with me, i had anxiety. The rest of my clinical was normal.

This year my neuromuscular doctor called it pure upper motor neuron syndrome. Clinical is the same as 2012.
She said
I have just as much chance to get Als/pls as she does. (That was confusing!) Go live your life.

I have to Go back every 6 months for clinical exams. It all sounds good, I just wish my body felt good. I do my best trying to live my life and not worry...some days are better then others.

I am very grateful I don't have Als or pls at this time....Vickie I like your positive attitude.

Thank you all for your support and sharing your own stories with me.
 
Vicki and Barbie, thanks for the advice, I will follow it.

I don't talk about myself in my past posts but this time I just had to let it out and it felt good doing so. Future posts will be limited to seeking advice not moaning. I want to be a positive presence on the forum.

Monster, you have challenges but lots of hope to. I will pray that the outcome is good for you.

Remember SLL (stiff lower lip) and you will drool less.

Love and hugs to all.
 
Guguy,
I am glad you shared your story with us, this what the forum is all about. I think you have a positive presence in your post.
Thank you for your kind words. All my best to you...
 
Last edited:
You have a positive attitude and that helps you somehow, believe it or not.
 
Thanks to all.
 
GuGuy,
I just want to add something from a medical perspective. Never trust a diagnosis of a neurological illness from anyone other than a neurologist. You cannot test tongue fasciculation's when poking a tongue out. They ALWAYs twitch.
 
Status
Not open for further replies.
Back
Top